Life's Little Roses...

who will care for my boys when I am gone?

There weren’t enough seats in this large waiting room. The olive-colored walls clashed with the purple cloth chairs and wooden armrests. Its walls reminded me of my bedroom in high school with all the posters and bulletin boards. The room was unevenly lit as only half of the space had fully working fluorescent lighting. The tile was an off-white that almost looked yellow in such poor lighting. Sunlight struggled to shine through the smudged and streaked windows. This space was sensory hell, and normally I would spend a considerable amount of time talking myself through coping strategies to help guide me through such an unpleasant environment, but a couple caught my eye across this large room.

Two women with similar faces were getting settled into the only remaining seat in this room. The older woman was in a wheelchair and the younger one who had her face was locking her chair into place. I remember thinking they both had such lovely skin. Deep, rich mocha with a touch of an orange undertone that really shimmered when light from the sun managed to sneak through smudge covered windows. The younger woman gently stroked the older one’s long gray hair. She wore her hair in a loose bun that sat low, just above her neck. Some hair hung freely in the front and swooped some across her forehead. I remember she had such thick hair for an older woman, it hadn’t started to thin out.

I wondered how long my hair will stay thick. The one with the younger face said, “mama, do you want a magazine?”

“That’s her mother,” I whispered to myself.

Of course, that’s her mother! They have the same face.

Her mother just looked at her with the kindest eyes, they reminded me of Aidan’s. She didn’t say a word, but her daughter knew she wanted a magazine. I could tell she reads her mother’s eyes. Just as I read Aidan’s. As her daughter’s boots clicked across this kind of white, kind of yellow tile floor in search of a magazine, I watched her mother. Her left hand started to tremor, and she would slowly bring her right hand to comfort her left.

As she held herself hand in hand, her eyes scanned the room. She didn’t look at anyone, her eyes took the same path mine did. Chairs. Walls. Lights. Tile. Windows. She then quickly looked down at her hands. The room was probably too much for her as well. Her hair came undone from moving her head around the room. Her daughter returned with a few magazines. “Mama, your hair came loose. Let me fix it for you.” She paused as if to gather herself, then said, “I am going to fix your hair, mama, it came down.” I found her announcing her actions comforting as it’s something I often do with my boys…and something my husband often does with me. I watched her as she gingerly pulled her mother’s hair back into another loose, low-hanging bun.

Does her mother like her buns low and loose? Perhaps it hurts to tie her hair too tight?

Once the daughter finishes her mother’s hair, she moves to take the seat beside her. And as she lowers herself into the chair, I see it…exhaustion lives in her bones. She takes her time sinking into these incredibly uncomfortable chairs and lets out a heavy sigh. She closes her eyes, draws air into herself, and lets it out slowly. She turns to her mother, smiles, and offers her a few magazines to choose from. I was interested in what she chose, but I hear my name in the background. I can tell they had been calling me for quite some time because I could see the irritation in the nurse’s face as I make my way towards her. I didn’t care, I was too caught up in the mother and daughter across the room.

I thought about them for days after I saw them. I see my life in theirs. I see where I currently am…and I see where I am heading. My life is like theirs in many ways…and unlike theirs in so many others. I see myself in the daughter, caring for her mother, only I care for my boys. I see myself filled with so much love and affection for my boys, but I feel so much exhaustion as well. I am tired. I am worn down. I am but one person. And I wear out.

I don’t allow myself to feel these feelings, especially not publicly, but they are there…right beneath the surface. Autism is lifelong. Society is hell for the disabled. I alone cannot change this world. No matter how hard I try. The changes I want to see occur most likely won’t occur during my lifetime, probably won't happen during my children’s either.

I deny myself the permission to feel what I need to feel here. I always need to present a strong, confident, capable, loving front. But strength shouldn’t be tied with always being positive. That isn’t strength, that is denial. Everyday isn’t an easy one. For myself or my boys. Strength is allowing myself to sit in the soft parts and sort myself out. I need to be confident enough to say that “I am tired.”

I see myself in the mother, but I don’t know that my boys will be like the daughter. As I age, I will slow down, my brain will change, memories will fade, energy will wane, and I will need help. If it were up to me, I would perform at a high level forever to care for my boys, but that is not how life works. Would my boys care for me as this daughter cared for her mother? I won’t rule out my children’s capacity to do so, but I just don’t know.”]

I just don’t know.

And I have to be strong enough to say that.

And because I am, I know that they shouldn’t be obligated to do so, what I want for them is to live long, happy, healthy lives with a few friends. They don’t have to push me to my appointments, do my hair, or get me magazines. I just want them to live happily rich lives with some amazing people who will love and care for them just as I have their whole lives.

But I would not have reached this point in my journey if I didn’t allow myself to live in those pockets of doubt and fear (fear that I find to be rational, honestly). Now I have to worry about them finding their people, their happy, and their place in this world that is not designed for minds like theirs.

My great-grandmother had two gardens she loved. One in the backyard held all the vegetables. The one in the front was full of beautiful flowers. Over the years, she let the vegetable garden go, it became too hard for her to keep up with and with less and less family coming over for visits, she didn’t need that much food anymore. 

But she still kept that flower garden up. Her roses were so beautiful. I always thought it odd that she never put any in her house. Isn’t that what you do? But she never did. “They belong outside, where they will last longer. I will water them and leave them be.” When she would get sick or was too tired to do so, my grandma or I would water her roses, and when she passed, we continued to water her roses.

Then my grandma died a year later, and it was on me to water the roses, but I no longer lived nearby. Her beautiful, probably would have won some awards, roses, are no more. They are gone because no one was there to care for them. To give them the love they deserved. To water them.

I think of my boys. What will happen when I am gone?

I think of all my life’s little roses. Who will water them when I am gone?